When Children With Autism Grow Up

I was 23 and needed a summer job; he was 21 and needed full-time support. He's one of an estimated half million people diagnosed with autism who are soon becoming adults — and who society is entirely unprepared for.

The heat that afternoon was intense. Weather maps across Iowa were deep red, and warnings flashed across the screen. A high school football player on the other side of the state had died from heat exhaustion the week before. Cornfields wilted and shrank into hills of despondent brown.

I was running late as I parked and shuffled to a dilapidated satellite classroom building. I introduced myself to a teacher sitting at a desk and told him that I was there to meet a 21-year-old man named "Scooter" — a childhood nickname, I'd later learn, that had stuck. (I’ve changed all names and some details to protect him and to comply with privacy laws.) I needed a summer job after my first year of grad school, and he needed staff.

My experience with autism had been limited to movies and anecdotes from friends who worked in "the field" — care industry shorthand for post-institutional residential and community-living nonprofits supporting people with developmental disabilities. (“We’re always looking,” the agency had said, and hired me without any sort of drug screening and a cursory, astonishingly fast background check. The drug screening was my only concern while filling out applications.)

The teacher looked like he was close to retirement age and wore a hearing aid. He asked about my experience working with people diagnosed with autism. “None,” I said, and his face dropped.

“Don’t stand directly in front of him,” the teacher said, “and avoid making eye contact. He might perceive that as a threat. He’s very keyed in on body language. Introduce yourself, but let me take the lead.”

I was led to a corner of the room I hadn’t before seen. It was darker than the rest of the space and a few decibels quieter. In the nook, I saw Scooter. He had a stringy mustache and hair with great curling wings. One of his eyes wandered slightly. He sat behind a crescent-shaped table padlocked to the wall at both ends of the curved top. Scattered in front of him were piles of flashcards, jars of beads, toy cars, unfinished puzzles, crumbs from lunch, and a laminated piece of tagboard with a strip of Velcro down the center. As soon as he saw me, his face tightened into a sort of grimace, baring his teeth, but the rest of his face, his eyes, posture, and hands were unexpressive as he blankly leaned out into the dim classroom.

“Well, hi there,” I said, waving. I began to clam up in all of the pits of my body.

“Well, hi there,” Scooter said, and he let out a deep laugh.

The person I was going to meet that day had been a child in my mind. In front of me was a man. A man only two years younger than me.

The three of us sat at the table while Scooter and his teacher went through flash cards, and Scooter looked at me a few times with a penetrating glare. His expression settled into a sort of skeptical normalcy. I felt like I was being sized up, and I now realize that I was. Scooter has had dozens of staff come and go in his lifetime. He was right to wonder whether I would be sticking around.

As medical phenomena go, autism is a recently identified one, although perhaps not as recent as the current vaccination panic suggests. The term was coined in 1912, and the first person ever diagnosed with autism is now 81 years old. And yet the contemporary situation is an unprecedented one: Though the data we have is under constant scrutiny for its accuracy, methodology, and usefulness, the Centers for Disease Control reports that the current rate of autism diagnosis in the United States is 1 in 68. This is a continuation of a trend identified by the Environmental Protection Agency that started between 1988 and 1992, when the worldwide diagnosis of autism spiked from 6 in 10,000 kids to 24 in 10,000. Scooter, born in 1989, is part of a coming “tsunami” of autistic adults. Signed in August of last year, the Autism CARES Act has devoted $1.3 billion in federal spending to research, which is a drop in the bucket autism currently costs the United States annually. That number only stands to go up. Simply put, we have no plan for any of this.

People diagnosed with autism and other developmental disabilities used to be stuffed into institutions, and the horrors that took place within them are well-known. I've read about Achilles tendons being cut to prevent people from running away, teeth being pulled to prevent biting, cattle prods used to electrocute, endless streams of sedatives. While most of that has stopped, with the glaring exception of overmedication, the current system of care is hyperaware of this history.

Ideally, those who work with this part of the population now strive to empower them, to remove labels and barriers and work toward independence. And yet this is the ugly fact, a vestige of the institution era: The chief witnesses to Scooter’s life are not friends and family but scores of paid providers. People like me. We accommodate, teach, and encourage. We support. We never punish. And yet our interests are split between doing genuine good for another human being and getting a paycheck. So we're also probably looking around for something that pays better than $10 an hour and doesn't involve regular emotional, and sometimes physical, beatdowns. And that, in turn, affects people like Scooter.

Mac had long hair, had studied English in college, and was a competent thinker and dedicated stoner. When I showed up to work on the first day, he stood by the Smoke Shack, a repurposed bus stop shelter, and was halfway through an American Spirit. His belly and hips were pressed forward. He said, as if informing me, “You’re Bob.”

I grinned and lit a cigarette.

“Smoke that fast. You have to work.”

Mac had known Scooter for five years. Scooter had been living in group homes since he was 11. For the last decade, Scooter would see his family about once a year, if that. He has no friends. Mac explained that my job was to help him transition into the agency’s day program, a place for people to socialize, do activities, and complete sub-minimum-wage work.

We entered what Mac called the Autism Room, or A Room. One man, in his forties, overweight and wearing a Ron Paul T-shirt, was vacuuming while doing a spot-on impression of the vacuum. Another, in his late thirties, was eating a box of raisins and singing his name. A third, approaching 60 and wearing overalls, took off his shoe, jumped out of his rocking chair, bit his shoe, began to cry, and then sat back down. The people supported, like Scooter and the rest of the men, were referred to as “individuals.”

Opposite each was a member of the “staff”: a reformed redneck with trendy sunglasses and a Metallica T-shirt, an aging Gen X'er with a pink poodle haircut and psycho-'50s-housewife-chic miniskirt, and a hipster who talked at length about shoegaze-y post-punk and horrorcore-trance hip-hop. Everyone had a clipboard and documented, ad nauseam, their daily assigned individual, from lunch choices to the size and consistency of their bowel movements.

Scooter was the youngest in the A Room by almost 10 years. He and Mac and I sat in a corner, Scooter in a plush recliner and Mac and I in stiff plastic chairs. Mac tossed the clipboard under his chair and said we would fill most of it out at the end of the shift.

“Hey, man. Um, dude. What’s up with you today, Scooter? Remember, we met at your school?” I asked.

Scooter looked at Mac.

“Don’t ask open-ended questions,” Mac said. “You have to use phrases that he knows and yes-or-no questions. Yo, Scooter. You want to go for a walk on the Key-Wash trail today?”

“Yuh,” Scooter said.

I couldn’t tell if he had said “yeah,” “huh,” or “no.”

“Key-Wash?" I asked. "So are these phrases, like, written down somewhere?”

“No, just pay attention. That’s a ‘yeah.’ Everyone assumes he’s saying ‘no,’ or ‘huh.’ Scooter, do you want to go for a walk on the Key-Wash trail? Yes or no.”

“Yes.” Scooter said.

“Scooter, do you want to go for a walk on the Key-Wash trail? No or yes.”

“No,” Scooter looked puzzled.

“So which one is it?”

“Do you want to go for a walk on the Key-Wash trail?” Scooter said.

“He talks in the second person,” Mac said. “So ‘you’ sometimes means ‘I.’ Also, questions are sometimes questions, but other times they’re statements. It’s part of his echolalia. Give him two choices and he usually picks the first one. Are you getting all of this?”

“Yeah, um, yes,” I said. I wrote “echolalia” on my palm and googled it when I got home.

Mac slathered Scooter with sunscreen and then documented that he had administered the medication “SPF 30 sport sunscreen.”

We piled into a junky minivan and Mac showed me how to fill out the mileage tracking and use the company card for gas. He prompted Scooter to buckle up and told me that we couldn’t take the thing out of park until everyone had their seatbelt on.

After Scooter clicked his buckle, Mac said, “You’re all telphered in and…”

“Telphered in and goin’!” Scooter rocked forward and back in his seat excitedly.

“I have no idea what that means,” Mac said. “Someone taught it to him a long time ago and now it’s just a thing that he says. He’ll say it pretty much every time if you prompt him. Some people go overboard and get him to say off-the-wall shit, but it’s not like he doesn’t have a sense of humor. Scooter,” Mac said. He changed his voice to mimic an announcer: “Nothin’ runs like a…”

“Nothin’ runs like a Deere.”

“Um, wrong one, dude. He does love John Deere, though. Scooter,” he gave a sneaky nod in the rearview mirror. “Try again. Nothin’ runs like a…”

“Stripper,” he said and smiled.

Mac made it a point to tell me that the whole “intellectual age” thing, that Scooter is like a 5-year-old trapped in a 21-year-old’s body, is bullshit. “He understands everything we’re talking about right now,” he said, “so don’t be shitty to him. Treat him like a person.”

Scooter sat in the backseat, watching the slumped cornfields as we whipped past them. We drove over a dam, past a large irrigation reservoir, and arrived at a trailhead. A sign read "Woodpecker."

“I thought we were going to the Key-Wash trail,” I said.

“I don’t know where the Key-Wash trail is or if it even exists. All trails are the Key-Wash trail.” Mac logged the van’s mileage. “He won’t be upset as long as you guys go for a nice long walk. Where we at, Scooter?”

I was off on my own a few days later. I parked the van in front of Scooter’s house and waited for him to come out the front door. I had a vicious hangover. When he appeared, he was wearing a new pair of shorts and clean white shoes, had shaved his mustache, and sported a fresh crew cut.

“To the A Room.” He looked out toward the front door of the house, disconnected from our conversation, and slowly buckled his belt.

“Are ya all telphered in and…”

“Huh?” he said, suddenly engaged.

“Are ya all telphered in and goin’?” I said in my best Scooter impersonation.

“Are ya goin’? You don’t want to go to the A Room today?” he said.

“Which one is it? Going or not going?” I asked.

“Are you goin’ to the A Room?”

“Groovy,” I said. My guts began to angrily rumble.

When we arrived and I parked, Scooter did not get out of the van.

“You don’t want to go to the A Room today,” he said.

I tried being nice, being firm, everything I could imagine. And finally I said, “I can wait all day, dude,” took a few steps from the van, and lit a cigarette. But that was a lie. Twenty minutes later, I said: “Scooter, please. I have to go to the bathroom really bad.”

Scooter sat in the backseat with the door open and said nothing. The sun pulsed down in oppressive waves, cooking whatever foul thing was roiling in my intestines and heating the van to what I hoped was intolerable for Scooter. And then Mac happened to come outside for a smoke.

“How’s it going, fellas?”

“We’re stuck,” I said, “And I’m about to fill my shorts.”

Mac laughed. He poked his head into the van. “Sup, dude.” He pointed at me and then at the building, so I ran in. When I came back out, Scooter's binder in hand, negotiations were still heated.

“Check it out, dude,” he said, showing Scooter. “We’re going to get out of the van, go rock, go to the bathroom, go for a ride in the van, then go home.”

“You want to stay in the van?” Scooter said.

“Can you move to this seat so we can talk better?” Mac pointed to a seat closer to the door. Scooter did. Over the next half hour, Mac continued to prompt Scooter to complete the next step of getting out of the van. Move to this seat, move to that seat, put your feet near the edge of the door, put one foot on the ground, put your other foot on the ground, grab this handle, and finally out.

The victory, if one could call it that, felt so small that I wanted to stay home the next day and the rest of the summer. It would have been easy for me to leave. But it was a job.

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Scooter and I soon spent six hours a day, five days a week together. I eventually didn’t need Mac’s help as often, which I think he respected. We would shred confidential documents from nearby businesses so Scooter could make money, and then head down to the Dairy Queen on payday. I would ask Scooter what he wanted, already knowing that the answer would be a medium chocolate ice cream with sprinkles. I would get a small root beer float. “How about this weather?” I would say, or, “They sure make one hell of a cup of ice cream here” or, “These are the days to remember.” He would just say, “Yuh,” and eat too fast.

“Slow down or you’ll get brain freeze,” I would say.

“Your brain freeze,” he would reply between bites and laugh.

We walked many miles of trails and worked through sorting and matching tasks. A lot of time was spent sitting in silence. When he was unable to regulate the information coming into his brain, I would perform a process called the Wilbarger Protocol. It was intimate. I would move a soft brush on Scooter’s arms, legs, neck, and back. Then he would put his hand in mine and I would grab his fingers one at a time, compressing the joints in toward his palm. Firm but gentle, confident but caring. I would watch his face, look for some tension to drop from it and then linger there, count to 10 in my head, and then move on to the next one. We were an impossible duo, a temp and one of the hardest guys in the agency.

But things got rough by the end of the summer. He started to refuse activities, and then he got aggressive, reaching for other staff members' faces, toward their groins, pulling people’s hair. He never tried to hurt me. I wasn't sure why. Maybe he wanted me to stay.

Before long it was my last day and I was checked out. He refused to leave the A Room at all, which just meant less work for me. I was happy to sit in a chair and play with my phone. But then it was time for Scooter to go home.

The dude in the Ron Paul T-shirt vacuumed, and his staff orbited. I called Scooter’s house, and the staff who answered said he’d be there soon but that Scooter’s roommate was going berserk and kicking holes in the walls.

“Are you done?” I said in a low, firm voice.

“Are you done?” he replied, laughing.

“Whatever, dude. I can sit here all day. They’ll give me overtime.”

Scooter said, “Whooossshhh,” and laughed again. The vacuum shrieked.

“Seriously, dude, I just fucking want to go home,” I said in a half whisper and stood up. “Out of the chair, let’s go.”

“Get out of the chair.” He said in a rough voice.

“So what, are we just hanging out here? Just chillin’ one last day? You haven’t had enough of me yet?”

“Oh, I’m just hangin’ out.” He said with a high-pitched, mocking tone. Repeated it for another hour. Whooshed every time I spoke to him.

It was about a month before I caught myself sitting alone at the DQ, slurping down a root beer float, or hiking Woodpecker with the hopes that Scooter and I might run into each other. Mac and I had become friends, and he gave me updates on how Scooter was doing while we played disc golf or went out drinking.

Mac showed up one day, pale, wearing a hat.

“Bad haircut?” I jabbed, and then he took the hat off. His scalp had bald patches and open abrasions. Scooter had had an episode and was hospitalized, Mac said. He put his hat back on. We ate Indian food and didn't talk about it much more.

Scooter has never been diagnosed with post-traumatic stress disorder, but he almost certainly has it. He has alleged that one of his mother's boyfriends sexually abused him, but the claims were unfounded because it was Scooter’s word against his alleged abuser's, which is common. By one estimate, people with intellectual disabilities are four times more likely to be sexually abused than people without.

Scooter’s allegations of abuse come in huge outbursts, and he echoes things that must have been said to him while it was happening. “You are a fucking retard, aren’t you?” and “Does that dick feel good in your ass?” and more that I can’t bring myself to repeat. During post-traumatic episodes, almost all of his frustration eventually manifests as physical violence.

Over the Indian food, my nostalgia turned into guilt, which, in the weeks that followed, turned into outright pain, a longing to be there for him. To help Mac and the other staff and ultimately Scooter. He would listen to me, I was certain. I could help him somehow. That thinking was rooted in the relationship Scooter and I had built together, but also, I now realize, in a sort of compassionate hubris. I can take care of him because he can’t take care of himself, I thought, and got a job part-time at his house.

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“It is Bob!” Scooter exclaimed, rushing to me. He looked tired, ragged, the stringy mustache coming back in, the wings starting to curl behind his ears.

“What’s up, Scooter-duder?”

“What’s up, Scooter-duder? Oh, I’m just hangin’ out,” he said and laughed.

“We’re still on that, huh?”

“Yuh.” Scooter said and then reached out for my face with both hands. I ducked out of the way reflexively. Mac appeared out of the bathroom and tapped Scooter on the shoulder.

“We don’t need to be doing that,” he said, and looking at me: “You ready for an adventure?”

Mac and I had to take Scooter to a pre-appointment; he was getting his wisdom teeth removed. Long overdue. Dental work causes so much anxiety for Scooter that in order to do it safely, he needs to be fully anesthetized, and they need to see him before they will put him under.

“Scooter,” Mac said as he drove, “what should we have for lunch after we’re done at the dentist?”

“Do you want to go to McDonald's?” Scooter said. McDonald's was more than lunch. It was the ace up our sleeve.

“Sounds like a plan, dude,” Mac said.

Scooter tried to pull the receptionist’s hair when we went to get his paperwork. He tried to pull a little kid’s hair on our way back to the far corner of the waiting room. Nobody looked at him. Everyone stared into their devices. White lab coats occasionally floated through the space.

“Bob,” Mac said, and nodded toward Scooter. He grimaced. Scooter has been in and out of inpatient psychiatric units his whole life, and the lab coats reminded him of that. He moaned and bent over, nearly touching his chest to his knees, and then threw himself into the back of the chair hard. He started reaching over my shoulder toward the person sitting closest to us, a young mother, trying to get at her hair or face.

“Let’s keep our hands to ourselves,” I said in a low, calm voice. Mac was in a vaguely athletic stance, ready to react.

Scooter looked at me, continued to make pained faces and reach.

“Scooter, stop,” I said.

Scooter suddenly stood and fixed his gaze on the woman. His arm was out and he started walking toward her, his face unrecognizably vacant.

I felt my own energy rising and stood right in front of him, puffed myself up to look big and imposing, and I said, “Sit down, now.”

Getting hit in the face doesn’t hurt. Not at first. At first you aren’t sure what happened, but it's vivid and embodied in retrospect. Scooter slapped me three times and, after a few attempts, boxed my ears, which sent me into a dizzy high. Overcome with a vibration, a warble in my gut of an instinctual magnitude spread to all of my limbs like an electric charge. Fight or flight or keep your fucking cool. Always try to do the lattermost. Finally, he grabbed my beard. Pulled slow, hard. That hurt right away, like a thousand pinpricks. Mac was there, holding Scooter’s hands against my face, trying to keep him from ripping out hair, asking him to let go.

“Scooter,” a nurse said, and he was off, Mac and I flanking him on either side. I glanced back over my shoulder as we walked to the exam room. Everyone in the place stared at us, wan and terrified.

We got through the rest of the appointment, received pre-op instructions, and kept Scooter from tearing out the nurse's hair. The whole ordeal felt, at once, bizarre and pointless. Of the vast, innumerable infrastructures of society — dentists’ offices, hospitals, mental health counselors, DMVs, voting stations, restaurants, bars, public parks — I have never been to one that was adequately prepared for someone like Scooter. And if that isn’t enough, the general public responds to him with fear and feels better when he’s out of sight.

An exit sign glowed like a beacon near the exam room. Then we ate McDonald's; it was terrible.

A few months later, I was working close to 30 hours a week. Every shift was Scooter and me. That was on top of full-time school, teaching, and writing my graduate thesis — an experimental, heavily fictionalized, and nonsensical book-length essay about working with Scooter. It was unreadable. In all, I spent about 50 hours a week with him or writing about him. And I dreamed about him almost nightly. Most of the time, he didn’t have autism, and we would talk, at length, about my work. Everyone who I’ve told this to in the field has said they've had such a dream about someone they support. All this and I was his “preferred staff,” not a friend.

One day, an administrator, I'll call her Ann, was in the house with Mac when I showed up for my shift. She was, and I suspect still is, the only consistent female presence in Scooter’s life and another paid provider, and she was holding a pair of medical safety scissors.

“We have a job for you,” she said with faux gravitas. “Scooter has really bad dingleberries.” Mac let out wicked, high-pitched laughter.

“Got it,” I said. I had no limits. They didn’t have to ask. I gloved up and took the scissors, went into Scooter's bedroom, and sat down on the floor while he sat in his rocking chair.

“Dude,” I said, “you and I need to do something.”

“Yuh.”

“It is going to be uncomfortable at first but will make you feel better when we’re done.”

“Yuh.”

“I don’t know how to explain this, so here it goes.” I looked up at him and made prolonged, serious eye contact. “Sometimes, our turds get caught in our butt hair. Guys like you and I, we have a lot of butt hair, so the turds make something called dingleberries. And dingleberries make us feel uncomfortable. So I’m going to take these scissors and cut out the dingleberries. Is that clear? Can you tell me what we’re going to do?”

“Bob’s going to cut your dingleberries.” Scooter spoke these words with an air of knowing.

Scooter got into the shower and I turned it to the temperature I knew he preferred. Ann and Mac hovered outside the door. I rolled up my sleeves and asked him to “bend over,” aware of his history of abuse but unable to think of more neutral phraseology, and he did.

The dingleberries were in a dense clump. Some were the size of walnuts. All of them were dry, hard, and matted in. I started by asking Scooter to wash with a soapy cloth, and then grabbed each one, careful not to pull, and clipped it out. I dropped them into the tub and they made audible thuds. As I continued to trim, I thought about how it must have been to live that way for months if not years, unable to tell anyone he needed help.

Scooter is of the generation that is bringing autism out of the shadow of Rain Man and into the cultural consciousness as a real thing. That damage has been done, however. I once told a woman I was attempting to court that I worked with a guy with autism — that it was hard work, but rewarding. “What’s his gift?” she asked. Savantism is a phenomenon experienced by 1 in 10 people on the spectrum. People like Scooter have to work hard to learn basic skills, and Scooter’s family didn’t have the resources — money, time, education — to teach him.

Intensive early intervention strategies like applied behavior analysis can help teach communication skills and “socially appropriate” behavior. iPads and apps are the new frontier of autism communication systems. After listening to people like Carly Fleischmann and Ido Kedar, we know that people who are unable to speak are still able to think and feel. They can tell us what it is like for them to have autism, but we must be careful not to generalize too much. The spectrum is so immense it is almost useless. As Hans Asperger said, “The autist is only himself.” Or the new adage, “If you know one person with autism, you know one person with autism.” And that person is a whole, complete person, inseparable from their “disorder.”

“You’re doing a good job,” I said, but Scooter didn’t show any discomfort. Mac and Ann giggled. It occurred to me, as I trimmed this man’s pubic hair, that there is no substitute for self-care. Nearly a dozen staff had started and quit in the two years I worked with Scooter. One guy took his first lunch break and never came back.

And I would leave too. A year later I had finished grad school and was set to move out of state. I put in my two weeks with relief. We all worried that Scooter would get agitated and aggressive, that the disruption of his routine would be too much for him to handle. So after talking it over with the other house staff, but not Mac, I decided I wouldn’t say good-bye.

Scooter sat in his rocking chair and I stood in the doorway to his room. It was the beginning of another hot summer. The light coming in through his blinds, brilliant white bands on darkened floorboards.

“Scooter, I’m proud of you,” I said.

“Bob will be back tomorrow?” he asked.

“Not tomorrow,” I said.

“Bob will be back in two weeks?”

Two weeks was an amoebic time frame for Scooter. It meant he would see me later in the vaguest sense — after a vacation or in the parking lot of the Dairy Queen.

I still work in the field, albeit many states away; it's now my fifth year. I’m in it until I burn out completely. It feels good to have a mission and to dedicate my time to the advancement of others’ well-being. I continue to unlock new chambers of empathy on my very best days and leave work feeling ecstatic clarity. Scooter did that for me first. That’s the selfish edge of altruism. And there's my paycheck, which helps get me through the door on the bad days. I spend a lot of time thinking about the power dynamic that existed between me and Scooter, how much of an outsider he is. That he lives in a sort of alternate reality, and I’m just a tourist in it. There’s a lot of truth in his status as “other,” but that kind of thinking keeps him on the outside. The reality is that everyone with autism lives in the same ambiguous, fraught, difficult-to-navigate world as the rest of us.

I’ve since been promoted a few times and spend most of my day at a desk, distanced from the hands-on work. Clearing and constantly running into bureaucratic hurdles is exhausting, occasionally infuriating, almost always tedious. My problems are all abstractions. I don’t get hit anymore. I don’t feel all that fear and adrenaline. And I miss it. I miss Scooter and other people I’ve supported. Now I often feel like just another murmur in a strange and hidden system of tax-dollar expenditure.

Scooter is going to live in a group home for the rest of his life. His needs, his desires, his day-to-day life will always be contingent on the presence of staff. Does he need this level of support? Certainly. But how did he end up here, so far away from the availability of solid, meaningful relationships? Because it's not Scooter’s disability that isolates him; society does. As a newer, much larger, and more visible generation of kids is growing up in the same system, an important question arises: Can this be changed?

During my drive out of state, I would break down into heaving sobs. I had to pull over and confront, for the first time, the fact that I loved Scooter and all of the people I was leaving behind. It can look strange, it can encompass all of our frustration and warmth and indifference in equal measure, because being a person is complicated, but treating everyone with unconditional and irrational kindness is the only thing that makes sense.

In his room, Scooter’s eyebrows were scrunched low. He looked down at his hands folded in his lap. He rocked for a bit, and we remained in silence.

“Bob will be back in two weeks?” he asked again.

“In two weeks. Good-bye.”

“Bob will be back in two weeks?” he asked, and I walked out the door.

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